So you may recall, I broke up with my old ob/gyn (see the full story here) due to many issues (some of which are also explained here). Shortly after I decided I was done with Dr. Tam, I google searched for gynecologists in Chicago. I know, I know…dangerous thing to do! Who knows what you could end up with! Since moving here, I’ve always gone to see doctors either by referral from another doc, or by advice from a friend. My regular doctor had referred me to Dr. Tam, so I couldn’t ask him for another referral (he seemed to really like her and think she would be good), and I of course couldn’t ask Dr. Tam – that would be rude: “Hey, ya know, you kinda suck as an ob/gyn…could you maybe give me a name of someone way better than you?” Yeah, I’m not that kind of person (I hope)…so I googled. I found someone online, who took my insurance and had nothing by 5 star reviews from current patients. So, I took a leap of faith and called to set up a consultation appointment. I figured there would be no harm going in to talk with her and see what she had to offer!

So, I was looking for someone I could feel comfortable with, someone who seemed to either understand my particular fertility problems or at least be willing to work with me and learn. Boy howdy, did I find her!

My first clue that this was going to be the right place was the paperwork I had to fill out before getting there. In the section to fill out about past pregnancies, not was there a place to mark if the pregnancy had ended successfully, but had a column to fill out about miscarriages and a spot to put how far along in the pregnancy you reached! Seriously, this place understood pregnancy does not = healthy baby all the time. Other forms I’ve filled out in the past just asked for pregnancy and how old the child is now.

I got into the office and the nurse brought me back for a few medical history questions and to check my blood pressure. Then the doctor came in. She was so nice! I was immediately at ease! She went over more history with me, spent time with me trying to get the time line of my pregnancies, losses and diagnosis figured out so she understood the steps I’ve already taken. She has a relationship with Dr. Freaking-Awesome (my MFM doc) already and was happy to let me continue to see him if/when I get pregnant again. She then talked with me about possible next steps – she really understood my diagnosis and current treatments! I couldn’t believe it, I doctor that actually understood me and was willing to help me!! It was a miracle. Right away there were some tests she wanted to run (that should have been done when I had first mentioned to my old gyno that I was thinking of trying to get pregnant). I’m going in today for some blood work. First off, she’s checking my Progesterone levels to see if I did in fact ovulate this month (I should be 7dpo if I did). She wants to see if I’m Oing on my own. She mentioned clomid, that it might be a good thing to introduce to my current regimen. I don’t know why but I’ve ALWAYS been hesitant about taking it. All of my docs (old gyno, RE, MFM) have mentioned it to me and I’ve always said no. But having stepped back now, I think it may be time – if it helps I’m willing to go there now. New ob/gyn seems to think that it may just be that extra push that I need. Okay, I’m ready for it then!

I’m also being tested for cystic fibrosis carrier and to see if I’m still immune to chicken pox and rubella. I guess this should have been tested for when I first wanted to get pregnant. If I’m a carrier for cystic fibrosis, DH will need to be tested too. If both parents are carriers then the baby would get it. I really hope that I’m not!

Step 2 of the new plan is to go in a few days after my next cycle begins (hopefully it won’t!) and get an endometrial biopsy. I’ve never had this before. She says that I have certain risk factors (PCOS, MTHFR, over weight, etc…) that could lead to Endometrial cancer, and she just wants to check and make sure all is well. It should be no worse than getting the saline sonogram that I had with my RE, so I’m not too nervous about it. She said I may get a bit crampier than the other test, so I’ll just take some ibuprofen or Tylenol before the procedure to help with that.

Can you believe this – all from a consultation appointment to see if I’d like to stay with this doctor! I can tell you, about 1 min into my conversation with her I’d already decided!! She even said if I get a positive pregnancy test to call Dr. Freakin-Awesome first to confirm viability and then to call her – she takes this high risk stuff seriously!! I know she’ll be able to deal with crazy pregnant me if/when I get to that point! I’m so happy with how this all worked out!!!

Okay, so now for the naming ceremony. I need to give her a clever nickname – oh, and by the way, if you live in the Chicago area and want to check out my new doctor, send me an email at somedaybabyt at gmail dot com and I’ll give you her contact info. Hmm…how about, Dr. Understanding? Dr. Delightful? Dr. Proactive? Any good suggestions? I’ll take them!! Maybe we’ll even do a poll if I get a bunch of good ideas! Leave your name suggestions in the comments!

I went in for my last (hopefully) blood test for a while. It was to check my homocystine (?) levels, which is realated to the MTHFR. I’m not sure what will happen if it comes back that I have that, too…more meds? Don’t know. Anyway I’m really hoping that we’re now at the point where I can get pregnant and sustain it all the way through. Sadly it’s taken 3 doctors, 3+ years and 2 lost babies to figure this all out. I’ve learned that I need to be more proactive about my own diagnosis and fight for the things that I want.

When I first went in to see Dr. Freakin’ Awesome (the MFM doc) I was asking him all kinds of questions about baby aspirin and lovenox, since I know so many of you ladies have been put on one or both of those. At that point (rightly so) he didn’t think it was necessary, since we hadn’t run the blood work yet. I was kind of just feeling out what might be used for some treatment. Now with the MTHFR diagnosis he has put me on baby aspirin, plus the extra folic acid. I’ve been doing a lot of “research” (by that I mean, Dr. Google has been consulted on this), and have found that most women diagnosed with MTHFR are then put on the baby aspirin, extra folic acid (on top of a prenatal) and then when they become pregnant are prescribed lovenox or heparin. I’ve found this article, that I have now printed off to put in my files. If (when…) I get pregnant I will be using it to convince whatever doctor I have at the time to put me on one of the two of those. I hate needles – really hate them, but whatever it takes ya know, as I’m sure you all understand. I also stumbled across a blog called The Expecting Father – MTHFR gene mutation and pregnancy. It’s written by a man who’s wife had recurrent miscarriage (2) and then was found to have the MTHFR gene mutation. When she became pregnant again she was given lovenox and delivered a healthy baby boy. They have since had another baby boy just a few weeks ago with the same treatments. I also know my dear blog friend K of Waiting for Sunflower has used the same treatment and her little guy should be coming in the next few weeks!! You can be sure I’ll be very proactive about getting this same treatment for myself.

In other news, I’ve scheduled a consultation appointment with a new ob/gyn (for May 24th). I found her by searching online (I know, kinda scary) – but she was reviewed on Yelp! and all of the reviews were 5 stars! She is covered by my insurance as well. I’m hoping to go in to the meeting with all of my medical records and just be very straight with her what I want. I’m hoping she has some experience/knowledge of infertility issues, specifically PCOS and now MTHFR. She sounds like a great doctor, but if she can’t meet my needs, I’ll be looking for someone else. I’ll let you know how it goes.

Okay, now on to the actual reason for this post! I wanted to do a show and tell of my new drug habit (sorry this beginning part kinda got away from me). First off, I’ve turned into an old lady – yup, I bought a pill box. I figured though if I need a pill box to keep track of everything, it may as well be a “hip” pill box, so this is what I got:

It’s individual canisters that screw together to make this stack. There’s an extra lid so if you’re going on vacation, you can just take the days you’ll need. It’s pretty fun, and allows me to see if I’d remembered to take my pills for the day. I just put my morning dose in the jars. I have an alarm set on my phone to go off to remember to take my Metformin at lunch and bed time.

Here’s a shot of the bottles of pills:

The big jar is the pre-natals (some generic brand my insurance company picked out…). The next generic looking jar is my Metformin. The yellow is the extra Folic Acid (I’m supposed to take 1 mg a day, but they only came in doses of 400 mcg, so I take 3 of those) and the smallest jar is the “baby” aspirin, which isn’t for baby’s at all, they just call it that. Though it is chewable and orange flavored!

So the grand total for the day is 8 pills: 6 in the morning and then then other 2 through out the day. Here they all are!

Nice, huh? The prenatal is a very vibrant pink. There is even a warning on the bottle that it may turn your pee colors for a while…yeah, really. Luckily I didn’t get that side effect! I don’t know why they had to make it so pink!

That’s my update for now. Hopefully my results will come back soon and I know for sure the full treatment for me, and hopefully, it’ll work! Oh…and btw, I’m on CD-21, and no sign of ovulation. My temps have been all over the place throughout this whole cycle. I forgot to do my OPK this morning. Might do it tonight and see what happens…

* * * * * * * * * *

Okay…so, I was just getting ready to hit PUBLISH and my phone rang. It was Dr. Freakin’ Awesome’s office and my blood work came back normal! Yay! So I just stick with the above until it works!

Okay, got the test results in “writing” back from the doctor. Here’s what it says:

“This individual [yours truley] is homozygous [I have 2 copies of the mutation] for the C677t mutation and neagative (normal) for the A1298C mutation in the MTHFR gene.”

So the fix is to add 81 mg of Baby Aspirin (the chewable kind, yay) and 1 mg of Folic Acid to my already growing drug regimen. Like I said in the last post though, anything to get my baby!!

I’m also being sent in for one more blood test, Homocysteine Level. Basically to see if I have B12 or folate deficiency.

I’m happy with this result, because it seems fixable, but 2 things kind of scare me about it:

1) Apparently the MTHFR gene mutation can tie in to vascular disease. I’m now in 3 high risk groups for a heart problem (women, obese and MTHFR gene mutation). Great.

2) I’m absolutely TERRIFIED of blood clots. Seriously, I’m constantly worried when I’m in a car for too long I’m gonna get a clot. My grandpa and aunt both in the past year have had blood clot issues and it scarred the tar out of me.

Anyway, that’s what’s going on in my life. One fun thing with my blood work, a copy of all my genes was in the envelope! Now I have pictures of my DNA…it’s pretty interesting!

Have I mentioned how much I love my MFM doctor? I really do! He’s been amazing to me…I’ve only seen him once, but when I have questions or tests come back HE calls me personally! Can you imagine that?? A DOCTOR that makes phone calls with test results???

Therefore I dub thee: Dr. Freakin’ Awesome! From now on, that shall be how I refer to the MFM doc. I wish I could have him for all of my ob/gyn, infertility, MFM related appointments…

Anyway, he called me this morning on my way to work (DH was driving luckily so I could take the call). My über blood work came back (really quickly too, as I though it’d be late next week before I heard anything). He said everything came back normal except the MTHFR – basically it means that my body doesn’t hold on to folic acid (which is a tiny bit important when trying to create and sustain a life…). It also can cause clotting problems that can lead to miscarriage. He thinks however (and he told me this when I met him the first time) that my 2 losses had just been bad luck and it didn’t seem there was anything particular that led to the losses.

He’s going to send me in for one more test…some sort of enzyme. I don’t recall the name (I’ll tell you when I get my requisition form). He’s also giving me copies of ALL of my test results, in case I ever move or get a new doctor so I don’t have to repeat the tests! Did I mention how freakin’ awesome Dr. Freakin’ Awesome is?? Cause, well…he is! My DH is heading down there after lunch to get my results and the blood work order form.

So…what is the next step? I will be adding a folic acid supplement to my daily Metformin and Prenatal. Also I will start taking 1 baby aspirin a day. So that’s a total of 6 pills a day! Oh well…if it gets me my baby in the end it is absolutely worth it!!!

Can I just tell you all how happy I am right now??? It sucks that there is so much wrong with me, and that it’s been a constant battle with my body and doctors these past 3 yrs, 3 mo – but now there is a better answer, and a way to deal with it that just may work. Now with the combo of my Metformin (so I am FINALLY able to ovulate on my own) and the Folic Acid/baby aspirin (to keep my baby once s/he is concieved), this just may work out!! A huge swell of hope has hit me again, and it was MUCH needed!!

I emailed my best friend yesterday because I’ve been having such a hard time the past month with all of this. Baby announcements, births, preggo bellies everywhere and nothing for me but empty arms where my 2 little ones should be. It hit me hard yesterday…if you’re on twitter, you probably saw my Infertility Pity Party tweets all day…it was a rough one. But, now today! I have hope again, something which is desperately needed. This just might work…

So today’s the day. I’m going to the blood draw office today after work. From all that he’s marked, it looks like they’ll be taking about 1/2 of the blood out of my body. So, I should be fine to drive home after that…um, right. This morning I bought a bagel and orange juice to have afterwords, just in case.

I’ve made a copy of the test order so I can have a record of what they checked. Also the MFM said he’d give me a copy of all of the results. I really love this guy, wish he could be my full time doc! I’m actually going to try to get all of my gynecologist records faxed to me so I have stuff to show the new person (when I find a new person…).

I’m going to use this post more for information for myself…I’m going to list the tests and using Dr. Google and WebMd, try to figure out what it all is and what it’ll mean if the tests come back positive for anything (the link on the test will give the website where I go the info, as well as provide further information). So here’s we go!

TSH – The TSH test is often the test of choice for evaluating thyroid function and/or symptoms of hyper- or hypothyroidism.

T-4 (Thyroxine), free – This helps the doctor to determine whether the thyroid hormone feedback system is functioning as it should, and the results of the tests help to distinguish between different causes of hyper- and hypothyroidism.

ANA w/ refl – The ANA test is ordered to help screen for autoimmune disorders and is most often used as one of the tests to diagnose systemic lupus erythematosus (SLE).

Cardiolipin scr/rflx – Tests for IgG and IgM cardiolipin antibodies are frequently ordered to help determine the cause of an unexplained thrombotic episode, recurrent miscarriage, or thrombocytopenia.

Chromosome Study

Factor V (leiden) – Factor V Leiden mutation and prothrombin 20210 mutation tests are ordered, along with other tests related to thrombophilia, to help diagnose the cause for venous thromboembolism (VTE). They may be ordered when a patient has a personal or family history of recurrent VTE, a first VTE related to oral contraceptive use, pregnancy or hormone replacement therapy, or when they are experiencing unexplained miscarriages.

Glucose, fasting – The blood glucose test is ordered to measure the amount of glucose in the blood right at the time of sample collection. It is used to detect both hyperglycemia and hypoglycemia, to help diagnose diabetes.

Lupus Anticoagulant – Lupus anticoagulant testing is used to help determine the cause of an unexplained thrombosis, recurrent fetal loss, or a prolonged PTT test. It is ordered to help determine whether a prolonged PTT is due to a specific inhibitor (an antibody against a specific coagulation factor) or to a nonspecific inhibitor like the lupus anticoagulant.

MTHFR, DNA mutation –It is involved in the pathogenesis of neural tube defects, stillbirths, and recurrent pregnancy loss. The leading cause of hyperhomocysteinemia is folate deficiency.

Profs – not sure what this is, maybe I’m not reading his handwriting correctly…

DAMN IT DAMN IT DAMN IT!!! As I was typing out the list I saw “Glucose, fasting”. Damn it!! Just remembered I wasn’t supposed to eat today. DAMN IT!!! Guess I’ll pushing these tests until tomorrow. So angry with myself right now! Grrr, Argh!

About me…

I'm a woman dealing with the pain associated with infertility (due to PCOS and MTHFR gene mutation). My husband and I tried for almost 4 years for our first child. In January 2009 we had success with our first IUI. On March 19th, 2009 we lost our baby, Declan, who had only made it 8 weeks along. In November of 2009 we conceived our 2nd child Sophie on our own with only the help of Metformin. On January 25, 2010 we learned our dear baby no longer had a heartbeat and had stopped growing at 6w4d. In June of 2010 I again found out I was pregnant. Though we had a rocky start to that pregnancy, our baby girl was born happy and healthy on February 8, 2011 - Aibhilín Gladys Groth Thornburgh.